Grace at the pool

it's late now.

a gorgeous day.  first day at the pool.  the kids playing, me reading.  close my eyes, feel the heat, i'm back in ethiopia.

after that crazy night, zoe had one of her shining moment- reminding me that she does have legs to swim, hands to clap, a voice to speak, and a heart that warms others.

i heard her talking to a young woman in the pool.  she was 22 and hadn't learned to swim so she was cooling off by walking around the shallow section.

"why are you walking instead of swimming?" asked zoe.

"i don't know how to swim."

"perfect! then i can teach you- come on- it's not that hard!" says zoe.

"we'll that would be something because no one has ever been able to teach me how to swim!"

there they were on the side of the pool- zoe is breaking it down, giving her the steps, telling her to hold the side and kick, now to let go of the side and kick.  zoe was calm, encouraging, and clear.  at one point the woman said:

"maybe i need some floaties to hold me up."

"no worries" says zoe, "the water will hold you up."

after about 30 minutes i see this woman doggy paddling around the pool.  zoe is following her, her little head bobbing to keep above water as she claps for her student.   so i'm clapping too, and this woman she is just smiling.

zoe says, "now how do you feel?"

"great!" she says, "i can't believe it!"

"well i knew you could do it!" says zoe.

there's my girl.  my unpredictable, mixed up girl who acts like a 2 year old then like a 20 year old.  a girl who can't get herself to let go of her fear of the vacuum and gets overly frustrated by losing her pool toy, can gently, patiently, teach an adult to swim.

i'm reminded again of her gifts- that they're in there- that she can shine in such a special way.

and there, in that afternoon at the pool, was the Grace.

warning- bad moments still exist

oh dear.

there was a very bad moment near bedtime.  bad.  bad like i could have won an oscar for my performance in a lifetime movie about the struggling parent of a special child. bad like even after i'd walked around the block to calm down, i still did the crazy- angry-turned-to-weeping thing, in front of her.  just plain bad.  i will spare you the gory details, but it left me spinney headed and grappling.  

i went to the hopeless place first.  the "i really can't **%&^$^ believe this is my life".  it's like that movie 'groundhog day', stuck in repeat.  it's never ever, really, going to get any better. little things yes, but really, it never will.  i'm way out of my league.  i don't know how to frame this.  we go forward, we jump backwards.  gain ground, lose ground.  it's never ending.  i feel the lines on my face deepen.

i went to the angry place, OK, i'd already been there with her, but i went back.  angry at her for being so challenged sometimes, causing me to feel so sorry for her, so worried for her future, for my future.  these words actually came from my mouth, " why can't you be normal!!!"  angry at myself for letting all that ugly out and into her ears.  angry at God- because i've had enough- really.

and i went to the pity place.  poor poor me.  poor zoe. poor mike.  poor boys.  what a lot we've all been dealt.  nobody understands how hard this is.  nobody gets it. it will never get any better.

then to the place of fear.  what does all this mean? what if things really don't ever get better- what if things keep getting worse?  what if she fully decompensates in Africa?   will life ever feel normal?  when will this not be so hard?

i tried to go to my happy place- escaping-  imaging being on a plane- being far away, somewhere warm- being alone.

then i went to the 'try to be rational' place.  you got off the 'normal' path long ago- don't keep trying to get back on- your life, her life will never be this typical path you expected. there are people who "get" her, people who have degree's in this sort of thing- call them.

i went to the bargaining place. what would i trade in for her to be less challenged?  definitely money and things- i'd give it all up.  what about one of my limbs?  maybe.  as if i could- as if this mental exercise does any good at all.  it's generated out of all the other places- out of hopelessness, desperation, pity, grappling.

then i stumbled and fell down at the cross. then i remembered what i wrote just two days ago.  what i said to zoe last week when she asked my 'why?  why is she like this?'   i said that she is perfectly made.  that she is exactly who God wants her to be. 

so i told myself that this life, with her in it, in all it's struggle and frustration, and joys and humor, is exactly the life i am supposed to live.  it is messy and broken but it's divinely orchestrated. i can't do what God wants me to do, without being shaped by this, by her.

just then a message popped up on facebook from someone who'd read 'the question' post, someone who's sister has downs syndrome.  it was a story about her sister asking her mother 'the question' and her mother giving a very similar answer- but more.  her mother reminding her of what she does have- legs to walk and arms to wave and a voice to speak and eyes to see.  and her sister began to dance saying 'i'm so happy i have these things- i'm thanking God that i have them!'

so i finally landed in the arms of a God who can handle my fragmented pieces.  who can handle all our brokenness.  who did make her just right.  who put us together in this family- for a reason. who will not abandon, whose Grace is sufficient.

haircut

oh dear. what goes up, must come down. 
another example of the always baffling inconsistency of zoe.

tonight, as usual, she was instructed to go take off her coat and shoes, put them away, go upstairs, get her pajamas on and brush her teeth.  notice i don't just say- go get ready for bed- because the tasks involved would not likely happen. the first time i went up, she's sitting on her bed, with her coat and shoes still on- reading a richard scary book.

now maybe i should have clued in.  i should have noticed the preschool literature choice and the inability to do the seemingly obvious first step of removing coat and shoes- and then softened my approach and offered assistance.  but i'm exhausted.  so i reminded her again what she needs to do- and tagged on that she needs to clean up her room.

when i came back upstairs a few minutes later- there is hair all over the bathroom.  yes, her hair.  she had decided to cut it.

now there are really two times in a child's life when they might cut their hair- one is when they're in preschool and are curious about scissors. hair hangs down and feels soft and it might be interesting to try cutting it. the second time is during the teenager years.  there is this new found independence- and with it a confidence that you're pretty good at most things, so when you decide that you need to see what you look like with bangs- you just do it.

i had an earthworm moment.  i stopped- looked at the bathroom, looked at her and her shaggy hair, and kept walking.  i just needed a moment.

when i came back upstairs i asked her what she was thinking. why it seemed like a good idea to cut hair instead of brush her teeth.

"because it was bothering me."

of course.  now i get it.  yes - an appropriate response to static-y hair.

i told her to please get in her pajamas and clean her room.  i sat there while she slowly pittered around picking up each item on the floor,  only using one hand, and assessed the damage.  she'd left the back alone, but had chopped large chunks out of the front and sides- you might be able to call them bangs- maybe.

when she went to brush her teeth- i had to just laugh- because it was so out of the blue, so random, and because she looks kind of funny.

but what i tried not to focus on, but lingers in the back of me,  is the impulsivity and lack of restraint- the apparent need to respond to whatever idea floats into her head- with out age appropriate evaluation.  where was the " on second thought.. i won't do that".  because when a 4 year old chops their hair it is funny- they don't know better.  when the teenager does it- it's also funny- they made a choice- they just need to live with it. she's stuck between the two worlds- not 4 and not 14.

she's not only in between, she's a little bit of both-preschooler and teenager- richard scary and harry potter.   but i already know that- so really, why am i surprised. 

so i decided to be here now.  to choose not to worry about what the play-out of impulsivity may or may not look like in the future- because i don't know. i decided it's just hair - it grows.  i decided to keep it a molehill and avoid making mountains.  i decided to let it go, and to laugh, because in the grand scheme of things, it actually is pretty funny.

preservation

today was a weird day. a roller coaster day. zoe alternated between being really amazing and insightful, and then regressing back to the wiggly voice that i haven't heard in months. the wiggly voice is one of the most annoying sounds to my ears- because it symbolizes her inner frustration- it signifies her loss of control. following suit, i also alternated between being completely calm and mature and patient and then wanting to wring her neck- but- i didn't- i kept it together for the most part. but the extremes bother me- baffle me. i think i get dooped. after a great morning of insight and connectedness- i can't believe that she'd scream bloody-murder and make the wiggle voice when her 3 year old brother tells her to get off the heater. it makes no sense to me. it's like she's having a seizure. like her brain is playing ping-pong. what's hard is that i get my hopes up- and then they have farther to fall.

this weekend i was on call. on sunday i got called to go in and help with a terminal extubation. what a formal, medical word that is. a family had decided to withdraw life support on their loved one. he had really bad lungs. the last few years of his life he'd struggled to breath. everything made him tired. changing positions made him short of breath. he had decided long ago that he didn't ever want to be on a breathing machine. but, as often happens, when someone begins to go- when their lungs start that final flailing goodbye- 911 gets called and people get intubated. he'd been in the ICU since that had happened to him last week- it wasn't what he'd wanted and he wasn't getting better. but there he was- ventilator tube in his mouth, feeding tube in his nose, triple lumen catheter in his neck vein (with bags of medicines for pain control, antibiotics,blood pressure support), blood pressure monitor line in his wrist artery, catheter in his penis, and wires to connect him with all the monitors on his chest. his kidneys were shutting down, his infection was overwhelming him, he would never breath on his own again. someones husband, someones dad, someones uncle. that morning they'd lightened the sedation to be able to wake him up enough to ask him what he wanted- did he want to come off the ventilator. he gave a definitive "Yes". so i was called to help with the terminal extubation. extubation is removing the tube for the breathing machine. terminal means final, because with out it he will die.

it was sunday afternoon. i was home with the kids and mike. everyone had a cold. we were watching movies. i'm horrified to write that this is what went through my head. do i really need to go in? can they wait until tomorrow?

this family had been in agony for a week watching their husband, dad, uncle, friend- suffer- knowing this isn't how he wanted it to be. his wife's birthday is next week, , his birthday is in january, their 40 year anniversary is at the end of the month.

i felt really badly about my initial, selfish thoughts- and then i dissected them. was it because i really didn't want to get in the car and go back to the hospital? or was it because i knew that december 12th this man would die? that he wouldn't make it to his 64th birthday, his marriage would never make it to 40 years. was it because i wondered when they woke him from his anesthetic sleep and asked him if he wanted the tube out, did he know it was terminal? did he know december 12th would be written in stone?

there is so much in our birthing and dying- but it happens in a moment. the presence or absence of spirit- life.

it makes me reflect on the drama of each day. the highs and the lows. the good and the bad. the growth and the regression. so much goes in to being alive. our minds dance with ideas and fears and hopes and plans and we are light and we are heavy. but the moments that change us forever are just a breath taken or lost.

so really, does it matter that she made the wiggly voice? no. it really doesn't. just because it makes me crazy, it doesn't need to mean that much. what does matter, is the long calm mature talk we had about what a nonverbal learning disorder is- with examples about how it affects her- in the day to day- in the moments. what matters is that i had the opportunity to share with her how she is extra special- what her strengths are- when she was focused and attentive.

and what matters is not that i had to go back to the hospital on a cold sunday afternoon. what matters is that this family felt supported- listened to- and admired for doing the most difficult thing a family can do- out of love and respect for their persons wishes. it's a lot harder to undo- then to not do. what matters is that december 12th is the day that they all reached peace about this- and they let him go.
the heart is really the first and last speaker. with a baby, they've had a heart beat before most other parts- but when they are born they take that first breath. when people die- their heart beats for a little while after the lungs stop. our hearts hold on until the oxygen in that four-chambered muscle is all used up. and that's when the spirit seems to go to.  you can almost see it- the moment when the spirit leaves. the ultimate end of a life.

i was teary when i watched the respiratory tech remove the tube just after the family stepped out of the room.  "this must be the hardest part of your job," i said.  "i've been doing this a long time" he answered, " it doesn't bother me anymore".  at first i was surprised because that day i was feeling soft and moved. i was feeling that intense union of our flesh and spirit.

but really, i get it. it's self-preservation. we all do it, it makes us human.   it's why i didn't want to come back to the hospital a few hours earlier. it's why i get angry at the wiggly voice instead of sympathetic to her inner turmoil.  it's why i sometimes lower my expectations for her growth, why at times, i've dodged hearing about other 11 year old's successes, it's avoidance of vulnerability. protection of our being. knowing our limitations.

so on december 12th i held his bloated hand while the tube came out, and then i left when his family was gathered around him, when his lungs had stopped rising, but while his heart still had a few beats left.  that day, i couln't bear to watch the spirit leave.

the wind today

right now i can feel God in the wind- moving things- shaking things up- then being quiet and waiting- then moving again.  i'm out on the back porch- regrouping- it has been a challenging day of a homeschooling.  zoe's brain is just off- and i can tell it's making her crazy.  we've plodded through- albeit with many an inappropriate comment from me ("That's it! i'm going back to work!") super- way to model handling frustration- way to be helpful- as if she would say "oh no- not that! OK i'll get it together now!" being a parent is so humbling.

by the time her domestic science class rolled around at 11- i was due for a break- there was no way i was going to class. apparently she felt the same way- when i picked her up- she was playing ping-pong with some boys while her class worked on their menu planning activity.  ( i would have done the same thing probably- but that's not the point).  her teacher remarked that at least she wasn't bothering the other kids.  that is good news.  she reminded me of Shiva- the twin brother of Marion in Cutting for Stone- his inability to function in school- despite his intelligence- his almost confident focus on what mattered to him and his ability to "climb into the tree house in his head, escaping the madness below, and pulling the ladder up behind him".

everything i told her to do- she either 'forgot' or just tuned out- was it disobedience or just legit confusion, inattention, overload?  it's hard to know with kids, but especially with nvld kids. one time an excellent therapist told me that when trying to figure out if behavior is just plain bad, vs. due to a disability- and then choosing to either punish it- or understand it - it behooves everyone to ere on the side of understanding.  she said if you're wrong and it's bad behavior- you can always adjust that- work on it, correct it later- but if you punish for disability- it will be years in therapy.  my heart was telling me to just let it go- give her the rest of the day as down time- but it's hard not to feel like i'm giving up- or giving in.  but that is what i did.

she just came running upstairs from down in the play room - elated.  she had been trying to climb up on top of this  ikea swing chair and use her arms to pull her up to swing on it instead of in it.  this is a HUGE motor challenge for her- it requires strength, coordination, balance and trusting your body.  in less than 5 minutes she'd done it- and done it with out help.  she is so proud of herself! i'm so proud of her.  it reminded me to trust my gut about her- to not over think it- each physical developmental milestone gets her brain more organized- we are all interconnected- mind, body, soul.

i think that cool north wind blew into the playroom and helped push her just a little onto that swing.
i think that cool north wind blew as i walked the boys to school and noticed the feel of their hands in mine- no longer the baby sized hands that get swallowed up, but they are now substantial - they fit.  
that wind blew in the grace to appreciate the leaves falling around us as we walked- to notice the contrast of the wet black bark and the pink and red and yellow leaves that still cling on- and the color of the blue gray sky.

God is everywhere.

dropping the bar

it all started because i cleaned out the closets. there i found years. years of memories- years of zoe and her work. and as i sorted through it- i could compare- i could measure progress- from pre-school until now- 5th grade.

i remember finding my own box of school work not long ago. it held the first things i'd done in kindergarden- a stapled book of dinosaur drawings - up to my fifth grade comparative book reports and poetry journals. i wasn't an A student growing up, but you could clearly see the progress, the maturity, the process was step wise- it was normal. each year i became better with handwriting, spelling and sentence structure. and with each year i became more invested in my school work.

when i went through zoe's work- i honestly became really discouraged. i realized that while there clearly was improvement, the slope was much flatter. she's gone from pre-school to more like 2nd grade in many things. she'd had some great examples in early years and some horrible examples last year, that didn't look that different from each other. that inconsistency stared me in the face.

and suddenly the lens shifted and it became about me, not her. what am i doing wrong? where on earth do i set the expectation level? what is she capable of if she could do the amount of writing we do now, 2 years ago? why doesn't she care?

and so i did totally the wrong thing.

i shifted into operating out of fear. that never works, and pretty much always ends badly.

i woke up today and i raised the bar. the copy work i gave her was twice as long and from a book, not a nice large fonted hand-out. the narration she gave about our reading about king henry the viii was disjointed and random and i tried to insist she try again or let me show her an example of "a good narration".

(great idea you over educated almost 40 year old with years of practice summarizing massive amounts of information into a few sentences very quickly. way to make your struggling 11 year old which a generalized information processing disorder- whose brain fights to order information correctly and then battles again with it's retrieval- understand. way to make her feel good about herself- compare her to you!)

it didn't help that today was one of those days when she woke up with her brain just not doing what she wanted it to. those days. those days when the distraction level is at "red"; the attention level is at "zero", and the sensory processing was off. you know when you sleep funny on your arm and you wake up and can't feel it at all, then slowly that painful -tingling sensation happens and then in a few minutes you can move the fingers a bit and eventually it resumes function? some days she must sleep funny on her brain.

between her off day and my upping the ante- it was the perfect storm.

half way through the day- when i began to consider poking my pencil through my eye with frustration -i stopped and listened to both of us and realized that i needed to get it together. i either needed to go smoke a pack of cigarettes, or go for a run. since i don't smoke, i went for the run.

i ran through our neighborhood on the first day that has felt like fall. it was so beautiful- but i felt sour. rigid. uptight and afraid. i couldn't figure out what i was so upset about. why i was so annoyed with her. i was angry at her lack of visually objective progress. angry at the inconsistency in her work. angry at her struggle. angry that her struggle is my struggle. but mostly so angry at me. because my anger fails her. it leaks out and spoils things. it takes what's good and makes it ugly. it is not love.

i spent the afternoon, while she was at Brain Balance, re-reading Kathryn Stewart's book "Helping a Child wtih Nonverbal Learning Disorder or Aspergers's Disorder". it's one of my go-to books when i am forgetting what life is like for zoe. when i loose site of the intensity of her challenges. when i need to be humbled. when i need to be blown away by her actual ability.

and there it was in black and white. my visually objective evidence. as i read, i began to remember where we've been. how differently the bar should be set- how the bar needs to be made of rubber or fabric, not metal or wood. it needs to be able to flex. that perhaps there shouldn't be a bar at all- in my silly little mind- perhaps it should be a beautiful mountain. one that we all climb at different speeds. one that we each take a different trail to get up. and maybe i need to remember that her pack is a lot heavier than mine. that anger weighs it down. that love lightens. and while i can't carry hers, i can walk at her pace. i can still hold her hand.

provisions

it was a day.

beautiful sun, a breeze, not to hot- the kind of day you're so glad you're alive.

it was a day of growth.

of the pendulum swinging and ending up in the right place. a day of grace. a day when i went to my dark place of abandon and then returned- stronger for it.

things were good until about noon.

we'd been at the pool for an hour or so- zoe had made a new friend named zoe who was learning how to swim. she patiently taught her- and gave her confidence and encouragement and the little girl did it. everyone was so happy and they swam around the pool together. it was good, perhaps too good. finally the boys were hungry and tired, but zoe decided she wanted to do a cannon ball. i don't even know what exactly she meant but i knew she'd never done it before and that by the sound of her voice, we were doomed. she was hovering over the side of the pool, toes curled in anxiety, flapping both wrists, as subtly as she could, and doing the self talk thing- "ok- you can do it, just move to the edge..." then flipping into the panicked "mom- am i going to hurt myself?" follow with "don't tell me - i KNOW what i'm doing!". i tried for about 15 minutes to 'help' with out helping. to be supportive and appear carefree, while i'm walking on eggshells- because she was beginning to unravel. calmly i told her that in fact we needed to go and that she was moving quickly into that place where she didn't want to be. that made her mad- and gave her something to channel all that negative energy into- me. she began to cry loudly and expressively that she was always the only one who can't do things. that she feels so badly that she can't do a cannon ball, that she NEEDS to do one now. that we CAN'T leave. that she WON'T leave. and the scene began..... her little brothers sensing the tension, obediently get out of the pool and get their shoes and towels.....people stare as her voice escalates and her frustration grows.... i long for my "she has a mild form of autism " sign, and acutely feel that pull between anger and pity and sorrow and the fear that this will get progressively worse. her little friend the new swimmer and her mother look puzzled and slightly anxious as well. and i'm hating it for her. for her overwhelm and her challenge. for not being able to get it together and just let it go. for the boys who are stuck with having "that kid" as their big sister. that kid who has fallen to bits.

and i want to cry because i've gone back to last summer, when i couldn't go to the pool with out this happening, and i've gone forward to tomorrow night when we're meeting people for dinner at the pool and i'm fearing this cannonball obsession all over again- and i'm exhausted by all of it, and thinking why me-poor me-poor, poor me.

the problem is, it becomes timeless. one 'little' incident, has histories and futures woven into it.

on the way to the car- i resolved that i couldn't do this anymore. that i needed to go back to work. that she needed to go to school- any school- maybe boarding school- in another country. i decided that i am no longer the man for the job. that i was already going to need years of therapy- and that even then- i may never recover. in my heart i yelled at God. i shook my fists. why is this so blinking hard!!! when will this ever end????

i was deflated, defeated and depressed. i put on my sunglasses and cried on the way home. zoe asked if this was because of her non-verbal learning disability. jude replied, yes- that is why you get sticky thoughts (the 5 year old therapist)- followed by saying, "and i have a yes-verbal learning disability" (the opposite of her) at which point i had to laugh. but i was too busy making my mental "i hate list" followed by my "i'm thankful list" which was much shorter, and i realized i had work to do.

when we got home and had lunch and the boys went to nap and zoe went to read- i got down to business- to what i do best- solve the problem. the left brain went into high gear and i got on line. i found every special ed school in the atlanta area and made lists, looked at websites, and made calls. i made an excel spread sheet and calculated the cost of school and what i'd earn going back to work. i felt productive- i felt hopeful- i felt in control- the opposite of how i felt at the pool.

so i ran upstairs to zoe and put it on her.

"zoe, do you want to be home schooled?"

desperately wanting, in that moment for her to say "no! thank God you finally asked. i want to be with other kids and teacher who's not nutballs!"

but i got, "mom, i'm reading!"

i thought about calling mike - sharing my data collection with him- venting about the pool/cannon ball episode- surely he'd see the light.

then i realized that i needed to just be still.

that acting or reacting out of fear is always the wrong choice. that much of my life i rush and re-act, i get pushed to a point and make a move out of fear or i put it on others to reign me in- usually mike. usually i make him do my dirty work. present him with my angst, and my hairball plan to get rid of it- and let him be the calm voice of reason. which sets up the dynamic of him as my saving grace and me as the wild overwhelmed scatterbrain.

but not today.

today, i reigned it in.

today, i was able to sit with it, alone. and in the stillness, i found what i was looking for. the answer was already there. the decision was made- by me. i am going to home school again next year- as scared as i am- because i love her, and we're not done.

"Be as a bird perched on a frail branch that she feels bending beneath her, still she sings away, all the same, knowing she has wings."
victor hugo

the bloody lip, the vacuum and the grace

today it was 103 degrees.

zoe was slightly sticky- mostly just crabby- low threshold land.
it's a hard place for her to be. and for me. for her i imagine it's hard because no one likes to be in a bad mood. for me it's hard because i'm waiting- for her to teeter off and fall into the bad place.

it might have been a good idea to play it safe. to stay in the air-conditioned house and watch movies. but i have this thing about not watching t.v and movies when it's beautiful and sunny, even if it's 103 degrees- it's like i feel guilty.

mike and i went to zion canyon for our 10 year wedding anniversary where we climbed up angels landing to renew our vows. the next day it was hot and dry and about 100+ degrees, and we had this amazing lodge room with a view of the canyon and a balcony and all i wanted to do was lay in that cool bedroom and watch a movie, but i was driven, compelled, to be outside. mike thought it was so funny that i couldn't allow myself the pleasure of just choosing to be inside and watch a movie for a few hours. i decided he was right. but it totally felt like i was doing something wrong- breaking some unstated, universal rule.

so anyway- i couldn't just follow her cue- beside the boys really wanted to go to the pool. so we did. now because i've opted for the "ooops mommy forgot the floaties" theme in order to encourage swimming, it means that i've got to be "tanto jump on it" all eyes on all kids all the time- and it's exhausting. add to that zoe having an off day- and my old, pre-nursing three kids- bikini top trying to fall off, and it makes for me wishing i had at least another pair of eyes and several more arms.

zoe found some kids to play with. they decided to play marco-polo. zoe had never played this before, but didn't tell them, and so attempted to follow along, which immediately resulted in her becoming the 'marco' role. then she was really lost- didn't know about closing her eyes, and appeared to not understand that she was supposed to tag someone. i kind of wanted to go and help her- but couldn't leave the boys. and i was kind of glad i couldn't leave the boys, because i didn't want to interfere.

that line again between teaching, vs rescuing, vs interfering.

the next thing i knew she is crying, because she apparently learned to close her yes and collided with one of the kids heads and is bleeding from her lips or somewhere- the dangers of braces. shes' really upset, and scared, and hurt, but mostly i think it was the tipping point for her. she had a moment of expected decompensation/ regression and i dragged them all out of the pool drooping bathing suit and all.

i thought about leaving. returning and going with the TV/movie plan- after all we'd done the sun thing. but i looked at the boy's faces and i just couldn't do it.

so we got some popsicles and had a break.

back in the pool- zoe found an old acquaintance from last summer who was there with her two friends. she did well for a while but then the brain pulled a switch and she got upset that she didn't know the friends, that she didn't know that any of them were going to be there that day, miss firing circuit. tipping point.

luckily it was time to go anyway- thank God for that already issued 5 minute warning.

she screamed -one loud scream on her way to gather our stuff.

i took a deep breath and tried to remember that this isn't about me. it's about her. helping her understand - helping her get it. anger doesn't really have a place here- or at least it won't be helpful. i kept reminding myself of my friend erin, who laughs and loves her life and rolls with it, six kids and all. i need more laughter i thought, even it the yuck parts. and i need to roll with it.

and then there it was.

leaving the building to get to the garage was a large vacuum, and it was on.

vacuums are the remaining loud inanimate object that can unwind zoe.

it was even 'the loud part'. the part that cleans rugs.

i thought fo' sho' zoe would haul off screaming with her bloody lip and all- flapping her arms and using that wiggly voice. but she didn't. she looked at it puzzled and said, " is that the loud part? because it doensn't seem so loud."

we went to the car. we talked about feelings and actions being different. we talked about how our actions affect others. we talked about being flexible and not so rigid. we talked about not screaming, but how well she handled the scary vacumm.

the grace was in my friend erin's example - and the grace i was given to remove my emotions from this situation and be: a parent. not an angry person who needs therapy because i'm so broken by having a child with special needs. (although i definitely would benefit from some therapy, again :)

the grace came as stillness.

how we write the story

i want to trade mine in for a new one.

yes i'm talking about my daughter.

today, i just want a neuro-typical 10 year old. i don't want to have to have to spend a hour and then have mike spend an hour talking out how to not say to some one, "is your dog about to die?" and then deal with all the dis-ease that comes with that. her anger at having to be told what is socially correct, her anger at not knowing, her anger at me for telling her that- for disrupting her perfectly constructed day of good feelings. she hates negative feelings- when they come, she is like someone teetering on the edge- and if pushed over - she'll ride the downward spiral into the dark place, a place of facing the things she likes to not think about, like having a nonverbal learning disorder, and having a hard time understanding the subtleties of language and expression.

she fell hard. and i sat on the bed while she sat in the rocking chair yelling,
"i hate my brain! i want a new one! fix it- you're a doctor! fix my brain- i need a surgeont" it probably wasn't the right time to correct her and say "it's surgeon not surgeont", but i couldn't help it.

and when i told her that she had a good brain- it became, " i hate being ten- ten is a stupid age- why did i ever have to turn ten!" it's always blame- something else is responsible for her feelings. and as i'm listening to her, i'm having a little bit of an out-of-body experience. part of me wants to laugh as the level of drama and part of me was so overly annoyed because i wanted us all to go to the summer festival in our neighborhood, and part of me was annoyed at the same thing she was dealing with. i was so angry at her brain too. so mad that things don't come naturally to her, that i have to teach her what to say, and then deal with the fall out of that.

after my hour of trying - i realized i was done and getting no where fast- so i took the boys to the festival and mike and zoe met us after another hour of her crying through her bad place. at that point, i was hot and bothered- cranky but trying.

at the festival her music school had a stage and her teacher asked if she wanted to play-

"oh dear God" i thought- not today- today we're teetering- today might be disastrous.

her teacher asked what she wanted to play?

silent night

it's june

oh- yankee doodle

and with that, she just hopped up and started to play, in a very flexible way- she made a few mistakes- but roled with it- she even fell getting off stage and landed on the keyboard, making a very dramatic exit, but didn't even care- it was like no big deal.

and this is the mystery of this child. she had a complete meltdown over being told what might not be a good thing to say, in the privacy of her own home. but has no fear or anxiety about getting on a stage, with out any preparation and playing piano- doesn't get phased by error or even care that she fell off the stage. not perfect- but ok with her mistakes. i would never have been able to do that. but the fact is, it could have been reversed- on another day. she could have thrown a fit on stage and pounded the keyboard and cried, and not cared about being corrected in conversation.

from what i remember from psychiatry rotations, stress is significantly exacerbated by unpredictability. humans can deal pretty well, even with really hard and terrible stuff, when we know when it's coming. high stress comes from not knowing when the ball will drop- not knowing when your brain won't be able to do math- or when you can't formulate your idea with words- or when your daughter might loose it.

when we left the festival mike took the boys home, and zoe and i went off so she could buy something with her money. but nothing at the art festival was under 8 dollars. we finally found a little store and after much debate she settled on a set of glitter animal "silly bands".

i tried to convince her to buy the 'fairydust'- but she wasn't interested- rats!

i'm thinking "phew" these are what a "normal" 10 year old girl would buy (maybe 8 year old, but close enough). we managed to escape another tiny stuffed animal or plastic princess crown, or wind up toy. but did zoe want to wear them on her wrist? no - she wanted to play with them, to line them up and count them, to have them have conversations with each other- to compare their features. now we were at the ice cream store, (she had the non-dairy sorbet- delicious) and in front of us are three girls her age. they're wearing armfuls of silly bands. they have shirts written on or signed by their friends, they're just hanging out.

i felt that heart pang. that longing- for normal- that feeling of feeling sorry for us. followed quickly by guilt and then sadness at my short sightedness- my human simplicity- my inability to ride it out- to have her bravery. i want to stand on the stage of my life- and be ok with not-normal, with "different, not less" and believe it.

most days, thankfully, aren't like this. most days i see her for her beautiful, amazing, interesting self- with out a thought of comparison. most days i don't think of "normal or not normal". and in reflection, i'm acutely aware of my disability, my weakness, the parts of my heart that are hard, selfish; much more so than hers.

she's working through the really hard stuff of her life. she's becoming her own. i need to spend more time re-framing it for me and letting her just be.


because really...

she spent the morning, grieving her challenge with appropriate social communication- and her ten year old desire for independence from her parents.
she then pulled it together- had fun and hung out with a friend at the festival, and played her first piano gig- she bought some age-appropriate toys and was very creative in her use of them.


it's all in how we write the story-

finding the pose

today i went to yoga.
i'm the tall skinny girl in the class who can't really get into the pose. my hamstrings are tight and i'm just not that flexible. i'm the one with the borrowed el-cheapo mat and the non-lulu-lemon exercise clothes. the girl who the teacher never comments on. except once.
i was in the back of the room- last except for the wall. we were doing triangle pose. i'd been going regularly for about 6 weeks and i figured no news was good news- that if i'd been way off - someone surely would have told me. but no. today i was in a different class with a different teacher.
"ok those are some nice trikonasana's!" he says walking the room, "except-hey you in the back! bend from your hip not from your side."
i looked around- it was me.
"i know that - but my hip doesn't bend any farther."
"ok- everyone stop, gather around me and i'll show you what i'm talking about."
but no one else needed to work on their trikonasana-
"lets try it again"
" no! bend from the hip- do you know where your hips are? who's class have you been in?"
but i did know where my hips were and i even knew what he meant, it was just that i couldn't do it- i just couldn't get my body to do what i wanted it to. and the harder i tried, the harder it became and i felt like i was unraveling. it was so frustrating. and embarrassing.

that is what zoe has to deal with daily. trying to get her body to do what she wants it to. knowing the outcome, but not understanding the process to get there. or even knowing the steps but not able to get her muscles to coordinate together to accomplish the task. it would be maddening- it would make me crabby and have sticky thoughts too. i wish for one day - i could be in her skin- in her mind. i think it would change me forever. an added frustration is the lack of reliability in mastering something. last summer- when she was 9, she learned to tie her shoes. this was an incredible feat. but it was completely sporadic. there were moments when she did it quickly and with apparent ease and then she'd just not be able to - as if that path in her brain was closed for the day. this made her crazy- understandably.
"why can't i do it today when i could do it yesterday!"
and it made the rest of us live in fear of her trying hard things because there was no guarantee that even if she'd done it before- she could do it again- and we knew where that would lead. this is perhaps the hardest thing about nvld- and many other learning differences- the inconsistency that inhibits the ability to feel fully confident. eventually - after months of success- she can feel OK- but even while writing this, i'm wondering how it would go if she had to tie her shoe today?

sometimes when she can't get her body to cooperate with her mind, she'll say with teary eyes and a quivery voice, " do you know how this feels?"
and now thanks to trikonasana and the brave teacher who dared call me out, i can say, "yes! i can!" and for this little window into zoe- i'm grateful.

the grinch

one of the things that's hardest about having a kid with nvld is that it's kind of the opposite of "Groundhog Day" (the movie). everyday when i wake up- i have no idea how zoe will be. there are days when the planets have aligned and life is as sunny as can be and i wonder if maybe she doesn't have a learning disorder at all, maybe i've been all wrong. but then the next day even, all that goes out the window and she'll be completely off. like someone smeared peanut butter all over her brain, and it's just not working and she's ultimately frustrated, and honestly, who can blame her?

last week was a perfect example- monday, was a pretty good day, especially because mondays are classically our hardest. tuesday was rainy and kind of awful- math wasn't coming, she couldn't remember the names of the state capitals, she melted down over not being able to spell "piece" (i can barely spell it- the i-e thing!) and reading was a challenge. wednesday was a dream! her handwriting was excellent, she was focused and determined- she did piano and typing independently- she thought it was funny when she forgot how to spell a word- and she shone at math! and thursday was kind of like monday. if we could figure out what it is that makes a wednesday, we'd be set. we'd both be set. because try as i may to reign it in, i'm like an amusement park mirror- i take where ever she is and massively distort it. i over react. i get frustrated with her frustration. i even get frustrated at her inability. "what do you mean you can't can tie that? you did it yesterday?"

oh- right, that is the problem.
oh right and it's not your fault.
oh yeah- and you feel really bad about it too.
oh right, this is actually, YOUR LIFE.


people have said that having nvld is like trying to write backwards with your non-dominant hand while on muscle relaxants and living in a foreign country. imaging your sensory system is off, so you receive signals of pain when you're having your hair brushed, the vacuum sounds like being on the runway of an airport with out headphones, and when you close your eyes you feel off balance. now imaging that you can't block out the ticking of the clock while someone is talking to you. so now you don't really know what the person is saying, because not just is there a clock, but also a dog barking outside, and three other people taking at the table next to you. now its you're "turn" in the conversation, but you've missed part of what they said because of the distractions, and the persons tone of voice is confusing to you, you aren't sure if they're joking or mad at you, and their facial expression is also unclear. so you do what's easiest- when it's your "turn", you just talk. you talk about what you know- american girl dolls or harry potter or whatever comes to mind even if you just said it. this of course confuses the other person, so their tone and expression are even more difficult to read. you're not sure what to do, but you have a good intuition that this isn't going so well, so you internalize that and it begins to chip away at your self esteem. and then after years of this, you become really stressed out and anxious when you're in social situations- or places where you know you'll be overwhelmed. and it's hard to forgive yourself and accept that this is just who you are. it's hard to understand why God make you this way. it's hard to love yourself. and it's unfair, really unfair.

sometimes in these moments when i think I can't take it any more- i see how absolutely unbelievable she is. and i'm so humbled. i think i know her so well, and i do. but i have no idea of what it's actually like to be her. she has to deal with the inconsistency of this every minute of everyday. she is the one who wakes up and doesn't know if today she'll remember the motor sequencing to tie her shoe. if words will come out easily or if she'll struggle with saying what she means. if math will make sense or not.
when i can get it though my thick head to remember this,
my small heart grows three sizes that day and i ride triumphantly on my sleigh, down to whoville where i myself, can carve the roastbeast.